Now that National Cancer Survivor Week has come and gone, oncologists have returned to the grim task at hand. Despite reports of promising new treatments, cancer still is winning the war, destroying nearly every other person it touches and leaving fear and despair in its wake.
At last month’s annual meeting of the American Society of Clinical Oncology, with little fanfare a task force on end-of-life care released the results of a recent survey of 3,200 oncologists. The study confirmed what many cancer patients and their families have learned the hard way: Oncologists, for whom patient mortality is part of the territory, too often fail to provide optimal end-of-life care.
While 95 percent of oncologists reported that they feel confident about managing pain, more than half said that their patients too often die in pain.
Questions in the survey designed to elicit pain management practices from the specialist physicians found that 25 percent of the oncologists who said they do a good job don’t.
Such paradoxes abound in medicine but seem particularly confusing when applied to such a common disease.
“There has been an enormous amount of progress in treating and diagnosing cancer,” said Dr. Robert J. Mayer, the professional organization’s outgoing president and a primary catalyst behind the study. “But lost in all the publicity about a decline in cancer deaths is the fact that half of all people with cancer succumb to it.”
Too many of these, he says, do not go as gently as optimal pain management would allow into that good night.
The last several years have witnessed a groundswell of support in the oncology community for recognizing the physician’s responsibility to address the issues of end-of-life care, Mayer said.
“Most medical centers are looking for the cure, the treatment, the breakthrough,” he admitted. “But for the consumer, the patient, the family–they don’t care about the breakthrough that may or may not affect them. They care that their doctor won’t abandon them to die.”
My family learned the truth of this early last year. It was probably in April that my 64-year-old father began in earnest to lose his five-year battle with prostate cancer. As is common in such cases, his disease had become resistant to standard anti-cancer therapies and wasn’t responding to experimental therapy.
Yet, even knowing this, we had no inkling how close he was to death. His oncologist had never discussed what to expect or when to expect it. In fact, he never confirmed that treatment had ceased to be an option, perhaps because he himself never arrived at that conclusion. (Three days before my father’s death, the doctor still was considering treatment options, including placing a feeding tube in my father’s chest.)
There were no end-of-life discussions about hospice or home-care options, or about psychiatric care to treat possible depression, or about strategies to relieve pain–especially critical because when prostate cancer spreads to bone, it is agonizing.
The only sound advice we received, in fact, had come a month before from an emergency room doctor who gave us a crash course on living wills and do-not-resuscitate orders, legal means to give families at least a measure of control over how a loved one dies.
“These are the kind of discussions I like to have with patients early on, certainly before the last month,” says Dr. Ezekiel J. Emanuel, a medical oncologist at the National Institutes of Health in Bethesda, Md., and the survey’s principal investigator.
“It’s particularly important to prepare patients with certain cancers, like prostate or ovarian cancer, for pain. Good pain management is common.”
Not for us. When my father’s pain became more than he could bear, we were reduced to alternately pleading with and badgering nurses and doctors for more pain medication.
They defended their dosages, claiming that too much morphine could kill a patient. Under any other circumstances, that would have been hilarious.
Emanuel attributed such an attitude to a “gap in understanding” caused by inexperience. “Although prematurely ending a life by administering too much morphine is exceedingly rare, doctors hear about these cases and believe they occur more frequently,” he said.
“Our study suggests, however, that the vast majority of oncologists don’t find FDA narcotic requirements problematic.”
So, then, why do oncologists sometimes fail to help their patients have as peaceful and painless a death as possible?
Mayer said there are legitimate obstacles to providing adequate pain management–a lack of insurance coverage for home health care is one–but that they’re not insurmountable.
“Oncologists reported that getting reimbursement from insurance companies for time spent in pain management was difficult. Yet at the same time most said that such difficulties did not prevent them from providing patients with the care they needed.”
Because the stakes are high in the war against cancer–oncologists use military terminology like “slash and burn” to define strategy–some lose sight of the fact that outcomes often are defined by something other than success or failure.
“One of the linguistic jams we’ve gotten into is when we tell a patient, `There’s not a lot we can do,’ ” Emanuel said. “That’s not true. We can focus on palliative care issues.”
Palliative means easing without curing. The primary reason oncologists fail to provide optimal end-of-life care is a lack of palliative care training. Mayer speaks of “the human face of oncology”; laymen would refer to it as empathy or bedside manner. If a doctor doesn’t have it, no one will expressly teach it in medical school, or later in actual practice.
Adding “hands-on” training courses to medical school curriculums and palliative care management questions to board exams is imperative to underscore the issue’s importance, Mayer said.
In the interim, every comprehensive cancer center should have someone on staff, preferably an oncologist, identified as a palliative care expert, Emanuel says.
For a group of physicians who encounter mortality daily and battle a disease of the utmost concern to the public, “caring for dying patients is an obligation,” Mayer said.
“It’s why many of us go into this subspecialty. From initial diagnosis, you make a commitment to a patient to provide care `till death do you part.’ Death is a part of what we do. Oncologists who don’t want to deal with their patients’ end-of-life issues are in the wrong business.
“To abandon a patient at the end of life is to abandon an entire family.”
When we imagined my father’s final days, the image we found most comforting was of him dying peacefully at home, his family around him. It never crossed our minds that he would die alone and in pain in a hospital in the middle of the night.
Unfortunately, this is the image we carry with us.
